Diabetes, and its Risks, are Real

Joel Connable, news anchor at the ABC TV station in Seattle, was found dead in his apartment a couple of days ago, having died from what was described as a “diabetic siezure”.

http://www.miamiherald.com/2012/11/08/3087599/newlywed-tv-anchor-joel-connable.html

Some of my friends in the T1D community have unfortunately experienced this.  Joel was 39 years old, and was married two weeks prior to his death.

This is THE fear I experience every day, all day.  Most people are afraid of how their kids will turn out, what their boss is going to say at this week’s meeting, and whether or not they’re going to have enough money to retire before they’re dead.  Yes, I worry about that stuff too, but my real fear is that I will face premature death due to hypoglycemia, hypoglycemia induced seizures, or from a cardiac event brought on by too many teenage years of hyperglycemic events.

Actually, the truth is, most of the time I ignore the fact that I am vulnerable to this very situation, compartmentalizing the risk so that I may be the aggressive (wanna be) athlete, ambitious employee, busy husband and father.

Should I live scared?

Should I live with reckless abandon?

Neither.  I believe both options will breed failure for those living with T1D.  While fear is a great motivator and reckless abandon is just that, a middle ground needs to be established.  Constant self analysis, development of the day and constant tweaking of care.  Blood glucose levels tested, basal rates adjusted, bolus ratios revised……the only thing constant about these is the change.  I know, that’s the difficult part, the hourly consistent focus.

And the T1D community cannot take news like this and become frustrated.  I admit, this news hit me a little hard today.  A 39 year old healthy male with T1D with everything going for him, lost everything.  I am 36, married with 2 children.  I want to be around to spoil my grandchildren.

HOWEVER, I CAN’T let this news define my outcome.  The T1D community can’t let this news defeat them.

We, the T1D community has to continue fighting.  Fighting for themselves and for the rest of us in the T1D community.  The self fight is the focus in blood glucose control and staying physically fit.

The T1D community fight is about helping each other improve the lives of those of us with the disease now, and helping to improve the lives of any of our children who end up being diagnosed.

Many changes are coming for the T1D community because of volunteers who raise money for research.

We, the T1D community, cannot just throw our hands up and take what complications come to us.  We need to fight with the tools we have now, and fight for better tools in the future.

So, in the month of November, Diabetes Awareness Month:

  • Be Aware of the risks, because they are real, and
  • Be Aware of the changes coming in the future, and the part we all need to play in order to obtain better care.  We can sit back and wait for something terrible to happen to us, or we can fight for something better.

Wouldn’t it be nice if I could tell my granchildren the story about how I used to have Type 1 Diabetes?

Because T1D Doesn’t Have Boobs

Before you get too excited, read the post and then decide what you think.

First of all, this post was my wife’s idea.  She’s the brains of the operation, so I follow suit.  She and I were watching TV the other night when a Susan G. Komen commercial came on.

I have to hand it to Breast Cancer supporters.  The Susan G. Komen Foundation has done a great job in raising awareness and money for breast cancer.  My wife said something to the effect of, “JDRF should have this kind of exposure”.  She’s right, it should.  And as a JDRF supporter, that kind of exposure is what I want for T1D.

Why are they so successful, and why am I so jealous?  My title states the obvious, but let’s review the numbers.

The 2011 census states that there were 311,591,917 people in the United States.  50.8% women.  Who’s going to say no to their mother, their wife or their daughter?  I sure don’t.

But for the T1D community, you have to pay attention to this next statistic.  2.6 million women were living with breast cancer in 2008.  Approximately 3 million Americans were living with T1D in 2011.  Similar numbers of prevalence, however, nothing is going to change in terms of the vast numbers of people involved in Breast Cancer Awareness and fundraising.  Pancreas VS. Boobs.  Yep, Boobs wins.  Every time.  Now, I say this in jest because we are not competing.  But the idea is that the pancreas does not draw the same amount of attention…..  Let’s face it, how many of us truly know exactly where the pancreas is?

So what does that mean for those of us dealing with T1D?  We just have to continue to work hard.  The AP study last weekend proves that JDRF is funding research that is improving lives of those with T1D.  Those families with T1D have to be more determined now than ever, to continue in the fight to cure T1D.  We are a small part of the population, with very low curb appeal to those outside of the T1D world.

So don’t get frustrated by that fact there is a lot of pink ribbons in the community.  We have to work harder.  Wear blue.  Talk to your friends and family.  Thank them for their donations and their volunteer hours.  Share with them the research information, showing them the progress that is happening because of their help.  And if you live with T1D, we need you.  Now, more than ever.

 

All stats were gathered from the following websites:

American Cancer Society Website: www.cancer.org

JDRF:  www.jdrf.org

Monday Night Run

I went for a 5 mile run tonight while my son was at soccer practice. I just kept thinking “how would the AP handle this?”

After waking up low this morning and pushing the start of my run back to make sure my blood glucose was stable, I am more determined to have the artificial pancreas.

How long is it really going to take to get it to market?

How much money is it going to take to get it to market?

What more can I do to help?

End of Study – Preliminary Statements

While this AP has not been perfect through the weekend, it has shown the ability to learn and improve on dual hormone therapy.  I am INCREDIBLY encouraged and EXCITED beyond belief at the thought of being able to wear the 1st generation commercially available AP as soon as possible.

Average BG, Saturday – 142

Average BG, Sunday – 126

And I didn’t do a thing.  Now that’s just cool.

There will be naysayers, and I’m ok with that.  Different insulin pumps are liked or disliked for different reasons.  CGM’s are utilized by different folks.  What I am saying here is that you combine these devices and make T1D management easier?  I am in.

The hurdles faced during the weekend are being addressed with the next generation AP.  The research director is already planning for the generation after that and working towards the successful delivery of a dependable product.

I am encouraged by this team because they have a personal drive.  Ed Damiano’s son is T1D and Ed wants this device before his son goes to college in 5 years.  He knows the hurdles, but is not frustrated by them, and the culture of the study staff follows suit.  I am impressed and look forward to working with them again.

I want to thank the study staff, especially Kathy, Kathy, Kendra (all pictured L-R), Rick, Helen Ann,and of course the lead guys Ed Damiano and Firas El-Khatib.

Thank you.

Now stayed tuned for some more information once I get it from the staff later this week.

Day 3 – Almost Sprung

Getting ready with my Dexcom CGM.  Not the NEW G4 that I have been wearing all weekend and the one that will be used in the next generation AP.

What do you think?  Should I volunteer for the next phase?  They’re talking about including rides/runs into the next phase, which is partial outpatient.

Hmmmm?